Small gripe, but need to air it. I just came back from another consult. Again I asked the NS how many millimeters I am herniated ( as he commented on how severe my chiari & syrynx are). His reply was,"well, I could measure it but") & glazed over the topic. This was my 3rd consult & the 3rd time this has happened. I do understand that there is no definate correlation between the size of the herniation & the treatment plan, but its MY syrynx, & the more they withhold info, the more I want it! Everyone here seems to know the intimate details of thier chiari, & its making me angry that they all comment on the severity of my condition but wont answer that question!!! WHY???Its bad enough I am going in circles with finding an NS,( he referred me back to the last guy I saw from the chiari institute who he is affiliated with at the same hospital, so much for an independant 3rd opinion, found out the 2nd guy is friends with the 1st guy who sent me to him), is it too much to ask??? UGGGGGG!! thanx for the vent!!!!!!
haha, it does seem that way!
What's the big deal with that anyway? Tell already! I get it, I didn't find out the size of mine until 6 mos after surgery...
thats a good point, i'll look into that, thanx
Is this one of those "if I tell you, I'll have to kill you" kinds of secrets???
Gosh Jessica, I'm sorry, it shouldn't be so hard to find out :( Any chance they put it on your MRI report, or show a measurement on your scans? Do you have a copy of your MRI? Yeah, size doesn't matter, but I'd still want to know too :)
Mine was listed on my MRI report, so check there first! Some doctors still go by older guidelines in which the decision to do surgery was based on the size of the herniation. Today most specialists are aware that the size doesn't really matter and it has more to do with the patients symptoms and if they have a syrinx or a disruption of csf. While it's good that your doctors are not going by the older school of thought they still should tell you the size if you ask!
I found DD's on her MRI report as well as the mm of her syrinx. There is no legal way for them to keep you from receiving a copy of your medical records if you request them. They might make you pay for it though :(
I probably will request it, but it doesnt seem like too much to ask for the NS I am consulting with to just tell me! geez
Like I said, my insurance is the worst. It doesnt cover me outside Nassau & Sufflok counties, & no out of network benefits. I literally have like 6 NS's to choose from,most of which dont have chiari experience. I did respect the fact that this guy bowed out, but I am hitting the end of the road real fast.
I say you try to get report. The good news in all this is that they are taking it serious. I am truly wondering if other neurosurgeons are finding themselves a bit stumped with this condition so that may be why you have been tossed back to the chiari center. This is all they deal with. With ego's as big as I would assume a chief of ns to have - I am surprised by the lateral toss which you have found yourself. Heck they all usually think they have all the answers and are the best. But if I were to look for the good in this - you do not want a surgeon who is questioning his own ability to treat. Is there a way to go completely out of this "old boy network ' for nothing more than a second opinion? New York is not far from a bunch of other places. Perhaps not for surgery but just for another un affiliated opinion? There are a number of drs who will do a consult for a fee long distance.